I read this quote on Facebook and I shared it with my FB friends. It is so relevant to what people with chronic illnesses want to scream out!
You can’t fix me! You can’t take away my pain! But what you can do is stand by my side just in case I want to reach out and touch you, just in case I want to share my day with you, just in case I need your shoulder to cry on.
The most hurtful thing you could do is to ignore me like I don’t exist anymore. I guess that is easier for you. And in some instances I don’t blame you. I can be a real pain in the ass! But then again, I could always be even before the “diagnosis“!
You see, I’m just like you! The only difference is that you have more dopamine then I do. Your neurotransmitters are communicating with your muscles to move like they should and when they should. My brain produces much less dopamine. Therefore, my muscles either don’t move the way they are supposed to or as one of my doctors put it, “Maestro hasn’t shown up for the concert”.https://images.app.goo.gl/F2SsqAKv8mtVLR7LA
Now I totally understand what he meant by this. He was telling me this to fully explain what someone with Parkinson’s might endure.
We will have to replace the missing Maestro with substitute Maestros! These substitutes might be as good or may not. We’ll have to experiment with them. Some are good and some are not. The orchestra might have lots of side effects. Some of the players might get severe nausea or just may go haywire making weird movements with their instruments! The players might might play all different songs at the same time or fall off their chairs. The orchestra might not be balanced or just may stop for no reason. They might see notes that really are not there on the musical sheet but play them anyway. Don’t worry though, researchers are looking for new Maestros all the time! They will try them out on us but they need the money to pay for them. So, until they get the money, we will have to use the substitutes they provide us with. I guess I’m probably afraid that this won’t ever happen. And it is understandable but we are supposed to have faith; one day probably not in my lifetime, the perfect Maestro will be found. This makes me somewhat upset but I’m supposed to be patient. I hope you can understand how I feel. I might lose a lot of concert goers. I mean, who wants to pay good money to listen to a concert with a substitute Maestro? When they find the right one, I’m sure my followers(friends and family) will come back to me as before the “diagnosis”!
When this happens; actually IF this happens, life will be so much better for all of us with PD. Our friends and family that use to come to our concerts will return. BUT, wait a minute! There is something else that can be done! The neurosurgeon can try and drill some holes in our heads and put some electros in there to smooth the music out. That could help temporarily. You know, nothing is forever! It might help with some of the concert players but definitely not all of them. And it probably won’t help with the emotional ones with PD or the ones with lots of anxiety. They just get so depressed about that so they don’t show up to the concert to play. Most of the time, they just stay in bed. No wonder they are so lonely. I mean, we should be positive, don’t you think?? We shouldn’t isolate ourselves. And while at home feeling sorry for ourselves we should practice playing as much as we can. That will help us when they find the perfect Maestro for our orchestra! Even if we are depressed, nervous, and it hurts our fingers when playing our instruments! Remember, there are lots of substitute Maestros out there!
And our relationships will get better as soon as we do! Right now, if we can’t play, they will find out! So stop looking! No good musician wants to play with a musician that doesn’t play their tune!! Again, we are invisible to them and definitely misunderstood.